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About Me

I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations.
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Friday, April 02, 2010

I was going to wait until Monday to post this picture. I realized that it would be too late for anybody to use this idea. To keep the shells from cracking, and fingers from turning "beautiful Easter colors," try slipping the egg into a wire whisk. The egg stays in place, and it easy for the little one to dunk it into the colors. Best of all, clean up (for the counters and for the child) is a breeze!

I have always been a social person. I think that the hardest adjustment to being a stay-at-home Mom was missing the daily socializing in the workplace. I missed talking to people. I missed my friends.

I was introduced to Facebook last year by a friend, and I was hooked. Immediately my social network was expanded. I have been able to get my daily "social fix" while staying at home. Scott no longer gets bombarded with questions when he returns from work, a fact for which he is grateful. In a spare moment I can briefly chat with a friend, or catch up with an old college buddy. For an isolated social creature like myself, Facebook has become somewhat of a lifeline.

I was introduced to the darker side of Facebook almost immediately. In my zeal to connect with others, especially amputees, I joined numerous groups. I was bombarded with friend requests within minutes of my clicking the "Join this group" button. Naively, I accepted many of the requests.

I started receiving emails from devotees and wannabes from all over the world. For those of you who may not be familiar with the jargon, a devotee is an individual who possesses a sexual attraction to the amputee. The stereotypical devotee is attracted to the amputee woman preferably utilizing crutches and not wearing a prosthetic. A wannabe is the individual who believes that they were born with one limb too many. These individuals covet the amputee's limb loss, and many resort to self-mutilation in order to achieve their dream of living as an amputee.

It has taken weeks to weed through the friends list to eliminate the unsavory individuals. I look at every individual, and carefully review the groups to which they belong. If they are in a fetish oriented group, I remove them. If they are a male with only female friends, I remove them. Unless they have a personal experience with an amputation, I remove them. It has been a laborious process, but my list has finally been purged.

Because of my experience on Facebook, I have become hesitant about exploring other amputee oriented websites. I also realize that, in order to build my readership and to increase traffic to my forum, I needed to reach other amputees. A few weeks ago, I set up a secondary email and started googling.

There is a plethora of amputee related sites on the Internet. Unfortunately, upon researching the site owners, I discovered that many were run by individuals who are devotees. I become worried when I think of the scared, unsuspecting new amputee woman reaching out for support on one of these forums.

A quick search on several of these forums revealed a troubling trend. Many of these sites are exploiting the new amputee to obtain pictures of residual limbs and heartbreaking stories. A facade of support has been created in an attempt to solicit personal pictures which are probably distributed for sexual gratification.

Needless to say, I did not make any friends with the site owners. I posted threads warning members about the dangers of posting personal pictures. My threads were removed. I have been kicked off the forums.

I have never posted a picture of my uncovered stump. For me, the residual limb is personal. I have shown it on an individual basis for "educational" purposes, but never to satisfy the curiosity of a bystander. I assume that any picture of a residual limb posted on the Internet will eventually find its way onto the wall of a pervert. I don't want to be visual fodder for some three toothed, unemployed, smelly old man who probably lives in a corner of his grandmother's basement or attic!

I have come across a couple of websites that are valuable resources. You have to register for both, receiving approval to set up a profile and to fully utilize the source. Although there is no guarantee, I suspect that this extra step keeps away the casual devotee.

www.empoweringamputees.org andwww.amputeenetwork.org are both growing sites. I have joined both and have not encountered any devotee issues. If you are looking to connect and share ideas or have questions answered, these resources may be helpful.

The sites are similar in design with both offering opportunities to join forums, groups, post status updates and write a blog. In many ways, consider these sites to be a "Facebook" for amputees. Personally, I like the empowering amputees site more, primarily because it is more established. I also appreciate that my blog post was displayed instantly and did not need to receive "approval" first.

Of course, I also recommend www.amputeemommy.com (yes, a shameless plug). This website has a small but loving forum. I can also guarantee that this web site owner is not a devotee and only has the most genuine of intentions.

Thursday, April 01, 2010

I have been trying to think of an adjective to adequately describe the level of fatigue I'm feeling. Unfortunately, I am so tired I cannot think of a good descriptor. This is a good tired though, one that comes after a long day of physical work.

Scott is home for Spring Break this week. We have been talking about landscaping our yard for several years. Until today, we have never made a real effort in that direction. This morning though, the stars seemed to align and we were finally going to tackle our yard.

We live only five miles from a rock quarry and discovered that they charge only $15 a ton. Compared to the $180 we were quoted for the same product to be delivered from a landscape company, we realized that we were going to save a lot of money if we picked up the materials ourselves. Our neighbor told us that they have double shredded mulch at our local county "recycling" center. All we have to do is drive there and they scoop it into the truck. Free trumps paying anytime in my book.

The weather was beautiful this morning. We agreed that today would be the ideal day to tackle the yard. I called and rented a pick-up truck, slurped down a cup of coffee and we headed out the door.

We stopped by the quarry on the way home to pick up our first load of stone. Two tons of rocks were scooped into the bed of the truck, to the delight of my little boy. He loved being close to loaders "dig dig digging." It was the highlight of his day!

4,000 pounds of rock doesn't look like a lot when it is in the bed of a truck. Let me assure you, it is indeed a lot of stones. It took Scott and I, working together with the assistance of an overly helpful toddler, an hour to clear the rocks out of the truck bed and to pile them on the driveway. We did two runs to the quarry, shoveling out a total of 8,000 pounds of rocks and stones.

After we were done unloading the rocks, we decided to "make the most" of having the truck. We headed to the recycling center to pick up mulch. We drove home, shoveled the mulch out of the truck bed into another pile in the driveway, and headed back for a second load.

We worked all day shoveling landscaping materials out of the back of a rented truck bed. My arms are tired and my hands hurt. My back is starting to stiffen and I suspect I'm going to be feeling the exertion tomorrow. To my surprise, my leg does not hurt at all!

I was able to keep up with Scott moving literally tons of rocks and mulch. Although I was hoping for a respite, my leg never began to ache. At one point I was actually lamenting the fact that I didn't have a valid excuse to take a break. I was physically able and felt compelled to continue helping.

When I first had my amputation, I never envisioned a day when I would be shoveling 8,000 pounds of rock. Today my prosthetic did not hamper my ability to physically exert myself. I not only moved thousands of pounds of rock, but I shoveled and raked tons of mulch. I impressed Scott and myself!

We are tired tonight and sore. However, we accomplished our goal of securing our supplies. We got a lot of materials unloaded and saved a lot of money by doing it ourselves. If we can physically recover without spending the money we saved on a chiropractor, we can consider the day a success!

Wednesday, March 31, 2010

It has been cold and rainy, so I thought I would introduce Robby to the joys of bead art. One brief demonstration and he was hooked. He happily spent the afternoon creating an array of bead hearts and happy faces. I melted them with the iron, creating a solid piece of "art." Robby was proud of his creations and eagerly waited for his Daddy to come home from work to hang them on the wall.

Robby showed Scott where he wanted his "gallery." I handed Scott a box of nails and told him that the hammer was downstairs. "No need for a hammer. Just hand me your leg." Yes, my prosthetic leg was used to drive several nails into the wall. As my cousin said, this is the most expensive hammer in the world!

This is not the first time that my leg has been utilized for a purpose other than walking. When he was younger, Robby loved trying to drop balls into the socket while sitting on the couch. He still enjoys a rousing game of "roll the truck into the leg" and let me tell you, nothing makes a more imposing mountain for a dinosaur rampage than Mommy's leg covered with a blanket!

I use my prosthetic to trample down the thorny brush which stands between me and the free raspberries at the park every summer. I never get scratched, but I did learn that poison ivy oil does adhere to the carbon fiber socket. I guess there is no such thing as a completely free berry.

I have found nothing more effective than my prosthetic for breaking up sticks and twigs for fire kindling.

On occasion, I have been known to take my leg off and use it knock cereal off the top shelf of the pantry. I wouldn't recommend doing this unless you are confident in your balance. I have also learned that you shouldn't do this unless you are absolutely positive that the cereal box is closed. I have already found myself standing on one leg in a shower of Lucky Charms.

There is no better way to knock on a door when my hands are full then kicking the door with my prosthetic. I can make an imposing sound without stubbing my toe! On more than one occasion Robby has asked me to fish small trucks and plastic animals out of a mud puddle with my "special leg."

I try to make sure that I sit next to Scott during dinners with our extended families. He often kicks me under the table in an attempt to silence me. If I position myself correctly, he can only reach my prosthetic. He hurts his foot and I don't feel a thing.

I no longer need to have a coffee table relax. I slip off my leg and position my residual limb on top. Voila.. an instant ottoman!

I suppose that turning my leg into a hammer is not surprising for our family. I have learned to depend upon my prosthetic to help me ambulate and to be independent, but I have learned to love it for its versatility.

Tuesday, March 30, 2010

I was scheduled for my scan this morning. The hospital just called and rescheduled the test for Friday. Apparently they only have one machine that is operational at the moment and they are only performing "emergency" tests. I know, in the scheme of things, waiting another three days is not seen as much more than an inconvenience. I am frustrated that I've been dealing with these "inconvenient delays" since August!

Most mornings Robby comes happily trotting into our bedroom at an inhumanely early hour, ready to start playing. I plead with him to go back to bed, explaining that Mr. Sun didn't come up yet to say good morning. Typically unswayed, I am then bombarded with requests for milk and a cartoon. I sleepily pour myself a cup of coffee and try to keep him contained until the caffeine takes over.

On Monday morning, the tables were turned on my early rising toddler. We were expected in Washington DC at 8:30, which necessitated our leaving the house no later than 7:00. Scott and I didn't set the alarm clock because have learned that Robby is more reliable in rising than a crowing rooster.

Our little rooster slept in. I woke up at 6:30 in a panic. Scott immediately hopped into the shower while I literally threw my dress on. I opened Robby's bedroom door and discovered that Robby does not wake up gracefully.

Much to his chagrin, Robby had to forgo his typical toddler "uniform" of sweat pants for a more formal attire. My Dad was receiving the Lifetime Achievement Award for his work in public service. The ceremony was at a downtown hotel and was being attended by many dignitaries, including members of the President's Cabinet. I was not going to let Robby look like a ragamuffin!

Robby absolutely morphed into Robby Rotten the instant I slipped his white undershirt over his head. He hates short sleeves, adamant that shirts don't fit because his arms grew. We were running late, but Scott had to take off his sweater to show Robby that Daddy's tee shirt was short sleeved as well. Unconvinced, I simply opted to strap my wailing miserable little boy into his car seat and ignore his tantrum.

After about 20 minutes of expressing his displeasure in the car (i.e screeching), Robby finally settled down and began to chatter about going to the "super big city." Thank goodness for the GPS because we made several wrong turns on the way to the hotel. Apparently I don't offer clear and concise directions. I contend that Scott doesn't listen because he is too busy complaining about the directions I am offering. We would never survive the Amazing Race, but I'm sure we would be entertaining to watch!

Scott, Robby and I arrived at the hotel in time to see my Dad receive his award. I am so proud to be his daughter. After working in the field for over 30 years, he has finally been recognized for his pioneering ideas and steadfast dedication. I have witnessed the long hours and the mental and physical exhaustion which often accompanied his passion for his work. He truly deserves the accolades.

I became a fascinated spectator to my Dad working in his element. I witnessed his "professional side," and the respect he receives is inspiring. When he speaks, everybody pauses to listen. Even Scott mentioned the number of people constantly vying for my Dad's attention. I was not surprised he received a standing ovation at the conclusion of his speech. I was honored that he mentioned me during his moment.

Robby and I spent most of our time in the lobby, stacking jelly containers and playing with sugar packets. When the presentation was beginning Scott and I changed places. Although Robby was behaving himself, I knew that he is too young to be trusted in a formal situation. Entertainment with containment was the only way to ensure good behavior. Scott introduced him to the inherent joys of getting water out of a water cooler. Robby was happy as could be, and Scott was well-hydrated by the time the ceremony concluded.

We had the opportunity to briefly explore the city after the ceremony. Robby was awe struck by the sheer size of his surroundings. The buildings, he concluded, were "way bigger than Daddy." He saw a few fountains and could not understand why he wasn't allowed to splash. He became animated in his plea to get into the fountain so that he could take a bath.

When we were approached by an individual soliciting for spare change, Robby promptly told him that his money is "in the piggy bank at home so he can save for college." He enjoyed dancing along with the tunes from the street performers. He told a very nice gentleman in a motorized scooter that he liked his "cool motorcycle." He loved the beeping horns from the cars. Robby was in his element!

Of all of the days adventures, including seeing his beloved Candy Pap-Paw, do you know what impressed my little guy the most? It wasn't the monuments, or even seeing politicians. It wasn't the music, the buildings or the traffic. In the big city, he was able to buy potato chips and a hot dog on the street from a cart!

Despite the cold weather, we had a wonderful adventure in the city. Robby was behaved and, more importantly, quiet during the ceremony. He enjoyed exploring, and he ate a lot for lunch. Apparently all of the excitement tuckered Robby out. He slept the entire drive home, waking only as his Daddy was carrying him up the stairs.

Monday, March 29, 2010

I have written before about dealing with the pituitary tumors that were diagnosed last August. Although the prescribed medication helps to keep the symptoms in check, I have known that the tumors need to be removed. I have lost count of the number of surgeries that I have had, but I know that the number is in excess of 25. I have never had a surgery close to my brain. The prospect terrifies me.

I have been treated for several months by a doctor who specializes in pituitary tumors. Initially, surgery was presented as the only option. However, at the last visit I learned that the tumors have remained stable in size, qualifying me for a medication protocol being conducted at the University of Pittsburgh Hospital. I was thrilled. The only caveat to the program was undergoing a specialized CAT scan.

I called immediately to schedule the test. I was shocked to learn that my insurance company was denying the authorization. I am used to being manipulated and pulled through hoops by my workman's compensation insurance company, but I have never encountered an issue with our personal health insurance. I was flabbergasted.

Because I am a cancer survivor, Scott and I have always chosen the highest level of coverage offered through his work. As the premiums continue to rise every year and with his salary remaining unchanged, this has been a sacrifice for our family. However, we realize the importance of quality health care and have not complained about the increasing financial burden.

Since we have the highest tier coverage, I suppose I was naive; I assumed that the insurance company would approve every medical test that was prescribed by my physicians. I was wrong.

After six weeks of leaving voice messages, writing emails and contacting various doctors, I have finally received approval for the scan and have it scheduled for this week. As it turns out, the scan is now of paramount importance.

I have had a seizure. I hadn't been feeling well throughout the day and had been experiencing headaches which are uncommon for me. I put Robby to bed and was hoping to go to sleep early. I was restless and uncomfortable in my own skin. I couldn't lay still despite being exhausted.

At first the movement was only my "cricket leg." I am used to my leg kicking involuntarily, and I wasn't concerned. I lamented that it was going to be a bad leg night and hoped that I would be able to sleep.

Then, all of a sudden I was enveloped with a warm, numb feeling. My ears started ringing as if I were underwater. I have never experienced a seizure, but somehow in that moment I knew what was happening.

I don't know much of what transpired in the seconds that followed. I remember my head violently turning from side to side, and my arms were flailing. I lost control of my bladder. I remember knowing that I couldn't stop the movements, and I was scared.

Almost as quickly as it started, it ended. I didn't know what to do. Should I try to sleep or stay awake? Scott was out with friends so he wasn't available to help. I knew that, although I know she wouldn't have minded, calling my Mom would have only caused her to worry and lose sleep. There was nothing anybody could do.

I have learned that most individuals diagnosed with pituitary tumors have suffered a seizure. As a matter of fact, it is surprising that this hasn't happened earlier. I have found some solace knowing that the growths are the likely cause and once they are eradicated, all of these symptoms will go away.

I am glad that the CAT scan is scheduled for this week, but I am frustrated that I had to battle to gain approval. I worry that the seizure is a signal that the tumors have grown in size. If this is the case, I am no longer a candidate for the medication protocol.

I can't help but blame the possible size increase of the growths and the subsequent seizure on the delay caused by my well compensated insurance company. Ironic that, in an attempt to save money, the insurance company has delayed my treatment to the point where I now may require a costlier surgery.

Apparently the money pinching little insurance trolls didn't calculate tumor growth potential into their financial equation! They lost their bet and will have to pay more. Unfortunately, I am paying the higher price. I have had a seizure and I am trying to deal with the rising fear of having another. I may have to have surgery instead of taking medication, and I won't be independent in taking care of my child for several weeks. Have I mentioned how much I despise insurance companies?